Can the research be trusted?

[Lizzie]

I'm currently trying to make my mind up about taking biologics and I've been reading up on the topic (not that I am very scientifically-minded and a lot of it is over my head). The research seems to show some impressive results in extending time till first surgery. Being a cynical person, though, I'm wondering who pays for this research and can it be trusted or is it largely funded by the companies who make the drugs? Anybody have any idea?

 

[Clash]

It depends on the study. Some are done by the pharmaceutical companies others by outside groups. Each study lists any conflicts of interest. So it shows if any of the researches have a stake in it in any way. So each study you look up you can scroll through and find that list.

 

[Clash]

Also wanted to add if you look at a study on a
say pubmed like this one

http://www.ncbi.nlm.nih.gov/pubmed/20393175

You can see those involved in the study and if you click on collaborators you can see all the others listed. Their names are links so you can click on individual names and see all the other studies they are involved with.

 

[fernando3]

I do trust the research, but pay close attention to the statistics, note that it talks about success at 56% of patients and how they responded. So there is a 44% population where it did not work.

In my case Humira did work for me for 3 years, then after antibodies developed it did not work at all. So the research numbers held up for 3 years, then the situation changed with me.

With Entyvio the research pointed to 60%, with me it did not work at all, so I fell into the 40% failed group.

So if there is a 60% that something might work and you have few other options, then I will go for it. Eventually you find out if it worked for you ! In the meantime the insurance company spend $34,000 and I wasted 8 months anxiously hoping that it will put me on remission, I am have no regrets about trying Entyvio, it sounded very logical way to go.

 

[Salad_Shooter]

Lizzie, try not to overthink this. Research is all we have, and it's changing everyday. Sometimes we just have to trust in things no one knows everything about...and biologics are some of those things. New things crop up from patients using these drugs that didn't show up in the clinic trials. The other side of that coin is, if 1 person in the clinic trials had an adverse reaction, or developed some sort of malady, it has to be reported as a possible side effect.

They can't know everything about a drug once approved because everyone is different and everyone will react differently to any drug.

We take chances every minute of every day. Sometimes you just have to take that leap of faith. And don't overthink things.

 

[Lizzie]

Thank you for the replies, much appreciated. I know I ought to be more relaxed about treatment and just put myself in my GI's hands, but it's hard not to overthink when all the options are so unpalatable! And I understand, too, that the research statistics, whether real or rigged, don't show 100% success rates, far from it. That makes it harder to decide what to do - the biologic drugs are so horrible and there's no guarantee that they'll even help. I'm really agonising over this and I know poring over the research isn't all that helpful, the more I read the more confused I become, but it's good to hear other people's real life experiences and opinions.

 

[Salad_Shooter]

Let me tell you my story, and it's not all pretty.

I had been sick for almost 30 years with no relief. I was almost out of hope. I was out of energy to keep fighting.

I had failed all medications...ALL of them. You name it, I had tried it and failed.

Along came Humira. I read and read, just like you are now, but I threw caution to the wind and tried it. I kid you not, inside of 24 hours, I had no pain. No pain. It actually made me feel uncomfortable in my own skin because I had not experienced 'no pain' in almost 30 years. I didn't know how to respond, how to act, what to feel, or how to live my life.

I quickly got over the uncertainties, and decided I could either cocoon or I could live my life. I traveled. I fell in love and married. I was happy beyond anything I ever dreamed of. I lived the fairy tale for many years.

Then on a fluke eye exam something was wrong. The Ophthalmologist needed a brain MRI.....and there it was......demyelinating disease brought on by Humira. I was crushed. My dream drug was over. My dream life was over. Now, without Humira, my MS-like demyelinating problems are escalating, Lupus is active, RA is active, COPD set in, Sjogren's worsened, etc.

Would I change anything? Looking back, should I have skipped Humira knowing then what would eventually happen?

HECK NO!

It would be like saying I wouldn't have married my best friend if I had known he was going to die shortly after we married. I would have done it anyway. As a matter of fact, I knew he would, but I took the chance and it paid high dividends.

For many years, I had a normal life that I was truly in love with. I ate life. I wouldn't give that up for anything.

Now I'm out of choices. There is nothing left for me, and my GI said I won't live long enough to see the next thing coming down the pike. But you know what? I wouldn't change a thing. I had my glory days. I had my beautiful life. I had my moment in time, and it was all because I took a chance on Humira. No one can take those memories away from me, regardless of the finish.

I'm not saying you should dive in and take a biologic. This is just my story, and maybe I should keep it to myself; I don't know. I really don't know. If it sounds as though I'm trying to push you into something, please accept my apology. Ultimately, you have to do what you feel is right for you.

 

[Lizzie]

Thanks for telling me about your experience. I'm glad you feel the drugs were worthwhile - I've been reading user reviews that say stuff like don't touch this drug with a bargepole, it killed my mum etc etc, so I'm getting more and more confused about what to do. I'm not sure I could be so philosophical about accepting the rough with the smooth as you, though.

 

[my little penguin]

Ds has been on biologics for 4 years
From age 8 to age 12
No issues
Two brain MRI ( due to other possible issues)
Nothing except normal and more normal
Scopes are now normal
As is bloodwork
Try googling any drugs
Say Tylenol
Something you give to infants on a regular basis it's safe right
Well that depends
Can cause liver failure Steven Johnson syndrome which can result in death

For kids I look at the numbers makes me feel better
Risk of death in the US for kids under 14

By car
1 in 250
By drowning ( even if they know how to swim)
1 in 1000
Odds of T cell lymphoma for folks without Ibd or meds etc average joe on the street
2 in 10000

Odds of T cell lymphoma with Ibd biologics and immunosuppressants
6 in 10000


My point is you take risks unknowingly every single day
No one is pointing out those risks to you

Plus any drug search in the Internet is doom and gloom
People with out issues are living life and not posting about how bad a drug is
Good luck

 

[nitty]

I see you are in the UK. Drugs that are available on the NHS have to be approved by NICE (National Institute for Health and Care Excellence), and they have to pass substantial criteria to be approved. There must be enough credible and unbiased research for them to qualify. Cost of the drugs is also a factor which is why we often hear of drugs being rejected by NICE if the cost:benefit ratio is not acceptable.

Of course there will be some drugs that are promoted over others by drug reps, but at the end of the day, if they are available on the NHS there must be good evidence and research to back them up.